Parenting a sick child (Parenting)

What is parenting a sick child? I can say for sure it’s not something I would wish on my worst enemy. My eldest child has two illnesses; one is autism, the other Juvenile Arthritis. I am a selfish parent because sometimes being the parent of a sick kid is exhausting. With each diagnosis and doctors appointments with never good news, sometimes I imagine running away and finally breaking down. People don’t talk about what it’s like to be a parent of a sick kid because the feeling attached to it is judged heavily.

I’m the mom who breaks down in my car before work after appointments. I head in with a smile and try to make others day manageable. Convincing me to get out of the car and put on the brave face is ridiculous. No one on the outside is allowed to see the drowning sorrows of motherhood. I don’t want anyone to know that I feel guilt because my child is sick. It was my genetics that gave him the issues that he has. I’m selfish because I want to hate every strand of my genetic code. Placing blame on something feels good to do. I hate that this happened to my child. It curls my stomach every time a new diagnosis or treatment needs to happen. I’m selfish because I just want him to live a normal life.

Recently strangers have judged me for my sons treatments. I have received stares from people unknown, parents like myself silently shaming what they do not understand. It’s sickening to have society post awareness yet remain ignorant as to why certain treatments are necessary for my child quality of life. I want to yell at the judgmental ass holes; I want them to feel the pain and hurt I feel, I want them to understand that I am a parent barely holding my head above water, and they are the people dunking it under. It’s not their fault this happened. A part of me wants to shake them, the other part of me just wants to them see my child and not his disabilities. In the grocery store as the person states my child is too old to sit in the cart, I imagine her legs being so sore she can’t walk. What would life be like for her then? I know it sounds sick to say out loud. The feelings are there and denying they exist causes feelings of rage and loneliness.

Loneliness, fear, and feeling of rage are taboo subjects among parents of sick kids. I hate being called brave because it’s my duty to make sure my child will live a good life. I signed up for it since the day he was born. Don’t place me on a pedestal because I don’t deserve it. I cringe hard when people say thoughts and prayers or I’m so sorry. Don’t be sorry for me, don’t be sorry for my child. I wish people would ask for more information and actually support research. Another thing stop giving information read off Google and think that it’s helping. Half the articles produced lack scientific research and data to make sense of the illness my child has. I loathe people who think that one persons illness is the same as Dick, Jane, and Sally. No illness can be the same its near impossible. I wish people would understand how frustrating the misinformation is. After being overloaded from appointments to have someone tell you that doctors knowledge is wrong is overwhelming. It adds to the guilt and shame parents of sick kids feel.

Despite crying in my car, laughing nervously in appointments, screaming at total strangers this is parenting with sick kids. When the parent states they need a break from this it means that they feel overwhelmed and scared. It doesn’t mean they want to up and abandon their sick child. The parent of a sick child would do anything to not have their child anymore. Expecting parents of sick children to not break down is unreasonable. On the outside everything seems fine because that’s the way we cope with the pain of our children. Having to hide these thoughts and feelings are detrimental to the mental health of the caregiver. Society holds high judgments as to what parents of sick children should be like. Walking in the shoes of the high and mighty is damn near impossible to not create the persona of someone falsely holding it together. Its being pushed off a cliff into oblivion, no life ring in sight. It’s not as simple as cry it out and get back on the horse so to speak.

Everything in that parents and children life changes from the first diagnosis. Home, work, school and mental self-worth all change. Sometimes the struggle of a parent is to manage the illness but manage normalcy without missing a heartbeat. The caregiver of a sick child often loses their identities as they try to navigate the waters of illness. Looking from the outside within my heart is with the other parents or caregivers who feel alone or at the moment sitting in a quiet place crying. It’s not your fault and your not alone in feeling grief and anger. The world just misunderstands selfish feelings but people trying to hold it together one diagnosis at a time they are not selfish just lost.

Written by Ali Johnson

I Could Pick Myself Apart (Emotional Breakdowns)

In the last two weeks of starting work again after being a stay at home mom for two years I felt like I failed my children. On Thursday night I found myself crying fountains, screaming at my partner on the phone, kids in tow, after feeding them McDonalds. I sat in my red Buick Century clutching the steering wheel my kids watching their mother break down. I had gotten off night shift, my sons babysitter had to cancel, running on no sleep for twenty-four hours… complete dumpster fire of emotion. Officially last Thursday ranked ten out of ten emotional and physical exhaustion of motherhood and marriage.

If someone was on the outside watching me I’m sure they said I was crazy, check me into the mental institution and call it a day. I had no self-control left in the evening. I wanted to be a good mom and wife and do it all. My mother-in-law kept saying she could watch the kids while I slept. My husband and I have been on the outs since going back. I was loading my plate with all the duties mother and wife related without taking time to breathe. My entire situation was a boiling pot waiting to spill over as I kept adding more life ingredients. Is that not what is expected of women today; to balance everything and give it all, with little to no complaints attached?

I’m here to say that should not be the expectation for women today. That should not be the expectation for anyone. Despite that moment in life I feel like to many people try to do it all and then feel guilty when they hit the breaking point. I broke down, and at first I was so ashamed of the things I said and the actions I did. My emotions and exhaustion from trying to do everything without help got out of control. The best thing out of this situation is looking back at why it needed to happen. I’m not happy it took this point of breaking to be heard, but to know that I’m still human and I still have lots to learn about life.

Having time to look at the situation my children had food in their bellies that night. Did I spend the last twenty dollars in my bank, yes I did. They were fed and according to my eldest son he really wanted to go and have time with his mom. I have been working hard the last two weeks at my new job. My son just wanted some mom time because he missed the time we used to have. He didn’t care that it was fast food he was happy that I gave him my attention and time to listen to him. I got to hear all the wonderful things going on at school. Learning about his friends, and what he likes. He didn’t care his mom was in sweatpants or that I felt like he deserved a better mom. Both of my boys ate and had fun just having their mom love them.

In the car I had a massive fight on the phone with my husband. We don’t often fight, and we never fight in front of the kids. On Thursday I was to emotionally exhausted to follow those rules. My husband is a great guy and my best friend. For the last month he and I stopped working as a team that we are. He was tired from work, I was tired from work, we both had been co-parenting just not in sync with one another. That morning I had sent a mean text message belittling him as a parent and a partner. My irritations from work and my doubts as a wife and mother came out and I fully admit I used my husband as a verbal punching bag. Sending that text message was awful, I hurt him because I was hurting. Having that fight oddly brought us together. Even though our children saw it they also get to see their parents apologize to one another, and that shows them it’s ok to have an argument and how to work it out as a team. This argument allowed my husband and I to say what we thought and create a solution for a better future. We both had childhoods where adults fought but never found a way to move forward. Silver linings and all we just have to keep moving and understand we are still learning to love one another by forgiving and being compassionate when we are hurt.

My children saw me cry. I bawled my eyes out and had the best cry. Crying can be healthy. I am the person that hides in the bathroom so no one can see me cry. I have done this since childhood because I was never taught what emotions I could have. Only learning anger and silence and emotions like I had on Thursday were punishable. Growing up in emotionally abusive environments are hard to manage emotions that are out of control. I don’t handle emotional stress in healthy ways. I wait until my breaking point to deal with them. My children deserve different futures from me. Seeing their mom cry showed them it’s ok to feel emotions. It’s ok for them to be upset and express their frustrations. After calming down I explained to my children that mom was upset but it’s not their faults. I also apologized for their mom losing control and I loved them. Explaining to my children that sometimes mom feels upset and needs to find better ways of coping than to yell and scream. It is not their job to solve my problems. It is however my job to teach them it’s sometimes ok to not be ok. I explained to my children they didn’t do anything wrong and held them tightly. When we got home I took some time to listen even harder to their needs because tiny humans need love the most, and I need to break the cycle of the past.

With everything happening I’m here to say my emotional breakdown happened. It happens to so many people in today’s society. People are expected to pile a thousand of things on their plates without complaint. Despite that moment in life I feel like to many people try to do it all and then feel guilty when they hit the breaking point. I broke down, and at first I was so ashamed of the things I said and the actions I did. My emotions and exhaustion from trying to do everything without help got out of control. The best thing out of this situation is looking back at why it needed to happen. I’m not happy it took this point of breaking to be heard, but to know that I’m still human and I still have lots to learn about life.

Written by Ali Johnson

Posting on Social Media Parents of Custody Battles

I have been finding myself angered by people writing hate on their social media during custody battles. Myself, has had problems doing this in the past without understanding the true repercussions of my actions. Stopping my social media hate towards my ex partner and my eldest sons father, puts in context what posting hate about each other affects everyone. It is so simple to say who really cares about the writing and posting of other people. Key problems posting targets is your children, your relationship past and future, your friendships, and your overall mental health.

Every time my ex would come at me for court or custody I would go on my social media and post about how pissed off I was at him. I would write about how much I hate him and I couldn’t believe he would pull that bullshit. Going as far as attacking his now ex-wife on social media because I felt like she was pushing him to argue with me. Looking back on certain posts that popped up on Facebook memories, I am so disgusted with myself. Understandably I was upset with him but to write atrocities as I did, mind blown on reality I would never say what I said about him to my children. If my son read when he was older I could fully understand how upset he would feel. It doesn’t matter how angry you are at your partner unless you want to affect your children mental well-being don’t post hate about your ex spouse or partner.

We as adults cry for people to stop bullying one another. So why as adults lack the ability to take our advice? Relationships and custody are emotionally charged there is not a plausible way to deny it. Every emotion is like a wave during this period for any ending it is a grief period. When kids are involved, posting on social media about their parents is unacceptable because it shows bullying is acceptable. That’s not the intention to bully the other person due to the hurt they have caused: between the lines it is still trying to hurt someone else to feel better about yourself. Due to it being highly public posting about another persons failures is trying to get the mob mentality to dislike the other person. Remember as a child and you couldn’t be friends with the weird kid who had a bunch of rumours on them, by posting hate and only one side of the story that person will become alienated by other people because there are three sides to every story. Who knows if that person posting about their custody battle is telling the full truth or only the truth that makes them look good to others. Victimizing people by one story is easy to do in our society today. All it takes is one social media post and people go crazy without questioning the full spectrum.

All that aside future employers can look up your Facebook and see all the drama that was posted. Was bashing another person worth losing a potential job? This is not worth losing more than what is already lost. I know when I see these posts about parents hating one another and I think to myself these people have no problem throwing other people under the bus to benefit themselves. A future employer would see that as selfish behaviour and shows lack of self-control. Employers want to hire good people capable of behaving like adults. No one wants to hire the playground bully.

Social media is a lawless place anyone can take what you post and turn it around to make it what they need to. Posting has no guarantees others will understand the intention of the poster. Social media has no safety net to stop it from entering into your real life. With everything said on this post the person who is hurt the most from hate on social media is the person who writes the post. Posting negative outlooks about anyone is unacceptable because it affects everyone and yourself. If you need a place to vent about your relationship issues regarding your children find a different outlet than social media. Be the bigger person and move forward without negative repercussions to your life.

Written by Ali Johnson

Summer Holidays & Motherhood

I need summer holidays to come to a halt. I have had it with my children and the summer. Between being a personal referee and a chef with little to no thanks, I am done. If I hear one more complaint I will personally buy the tiniest violin and play it at my tiny crotch goblins expense. I will make it my mission to act as immature as possible to show them the idiocracy that is our summer.

The beginning of summer I was prepared to be the best mom I can. I had plans to do something every day. Educational activities out the butt were planned. Healthy food for the whole summer was on the menu. We were going to do arts and crafts for god’s sake. I was going to laugh more and create the best memories for my children. Truly I had made a solid plan for this summer to go well. My children on the other hand decided we don’t do that here.

Plans to do something every day: well lets add whining and crying to almost every place we attend. I have never in my life seen two kids behave so barbaric publicly, I am embarrassed. They are not raised to be like this and I promise discipline was delivered. More challenging is why they were angels with the grandparents. I have no idea why the universe decided to bless my husband and me with feral boys. The angry mom you hear about shouting at her kids that was me. I’m pretty sure my downstairs neighbours think I’m nuts. I am the crazy white lady who yelled like I was in a metal concert with some sick throat signing. Mastering the art of using my Batman voice it scares little children. I put Kate Middleton mom face to shame. The face that says I mean business and I will not take any prisoners.

Educational activities: what are those? Non existent like dinosaurs. Despite the best efforts to match Pinterest mommies, I render my resignation. Cute little hand print paintings more like brown goo and a toddler eating paint. The blue crayons taste the best according to the coloured poo being produced. Arts and crafts have become impossible with the seven-year age difference. One wants to do crafts that require in depth instructions while the other needs arts and crafts to be uncontrollably messy. My eldest son who has autism needs crafts that require nothing sticky, smelly, or soapy. My toddler loves all three of those categories and is the king of messy. I give up it is not worth the battle ensuing in my home resulting in world war three. I tried my best, I think Pinterest moms are full of poo. They probably made the crafts while their crotch goblins slept.

I made a list about healthy food we would experiment with. Reading every article about autism friendly meals, toddler friendly meals, meals for carpenters was originally a great idea. Light bulbs going off in my mind I laid out plans to feed the boys of my home with great intention. We would become a healthy family. No junk food or sugars, and we would try more vegetarian friendly meals. I promised myself to cook wholesome meals no more going out to eat. My Amazon account became littered with bento boxes galore. Tupperware heaven and best laid plans aside all of it did not work out. It lasted two weeks at the beginning of the summer. After exhausting days with the boys I caved. We travelled on weekends to stay busy somehow we never packed enough to keep our children fed. My eldest son didn’t like how apples tasted, how bananas felt, and hummus looked like barf. The youngest is a phenomenal eater but his name should be Crumbs R Us. Our vehicle this summer became shameful. We caved for minutes of sanity, and we got junk food. My husband had no follow through with not getting food from the gas station because of forgotten lunch. My expectations of boys listening to be healthier has been lowered dramatically. Although we did not eat all junk all summer, for the most part we did eat home cooked meals. I tried new recipes and became aware of the contents in our food. The Guinea pigs that are my boys have claimed that I have seventy-eight percent accuracy in pleasing them. That states I did something right this summer.

I really did want to be that great mom everyone raves about in the PTA meetings. Missing the target greatly was a misfire this summer. I am envious of the perfect moms I see on social media. It’s not all bad though we did laugh, we walked everywhere, and we had daily dance parties. Even though screen time was “slightly” uncontrollable, we did read daily. I counted our reading logs we read eighty books this summer. Not quite one hundred like I planned but close. My eldest son obtained a library card and has steadily been reading novels. My toddler was outside and exploring the world at his pace enjoying the Earth as it should be. I’m exhausted from the summer and need school to start. Kudos to the teachers that make it from September to August with my tiny humans you are the MVP’s. I sit here wondering is this parenting in a nutshell? I am wondering is parenting jumping off a cliff with tiny humans and still making it to the bottom with no chute. Feeling eager to have the first day back to school and first day to daycare happen I am sad that I feel summer was a loss. My eldest son tonight told me that he had the best summer. I wonder what I’m missing from a parenting point of view to see it as a loss when he sees it as wonderful.

Written by Ali Johnson

The First of the Lasts

I saw my son turn into a little man overnight. Snapping a photo yesterday of his last day of grade two it hit me out of nowhere. We have so many lasts that it gets missed. The last nap, the last cartoon, the last of holding a baby and singing it to sleep. I once took in the deep intoxicating smell of my small baby boy. That smell still lingers in distant memory never to be forgotten. Now he smells as a stinky boy preparing for the next leg into growing up.

I am growing older I saw that in the photo. My son came into my life as I was leaving adolescence in my dust. As the saying goes there is no manual to having children, we all wing it hoping for the best. I held my baby for the first time and the last time I held him tightly in my arms when he was four. Where did the time go? I dropped him off on his first day of kindergarten and this was the first of the last times. Yesterday he finished grade two onto the summer of learning fun and adventure. Will this be the last summer we play with reckless abandon. How will I know this will be the last time we do anything?

He no longer collects tiny metal cars, I looked inside his room. It no longer holds home to a little boy filled to the brim with imagination. It holds the image of growing older. Science books and homework thrown about. Clothes with loud labels surround the floor. Try as I might with each passing day the last of little boyhood is growing away from him. The bond as baby boy and mother is now growing into a bond of a mother and her young son. Different responsibilities overtaking the loud fun we once had. I can’t remember the last time we were tickle monsters of TravisVille.

Everyone says if you blink they grow up so fast. I blinked of course as all parents do. I am sad to see the years creep up ever so silently. Missing the markers of my sons childhood and held them for granted. If only I was wiser I would hold onto the last times like hostages until somebody else said time to let go. I’m not quite ready to let go just yet. I want to hold my eyes open wide in order to not miss what is left of my sons childhood. The parenting nature doesn’t work that way. I will blink again and before me will stand my adult son onto his next adventure.

With this I say hold onto your babies a minute longer as you don’t know if this time is the first of the lasts. Hold your breath with passing moment of time and hold those true to your hearts so that way you can appreciate the fleeting time of growing older.

Written by Ali Johnson

My son at three months of age.

Promise, They Will Be Enough

[Will’s father came back into town, and then lied to Will about being around more and left. Phillip is trying to comfort him]

Will: Hey, you no what, you ain’t got to do nothing, Uncle Phil. You know, ain’t like I’m still five years old, you know? Ain’t like I’m gonna be sitting every night asking my mom ‘when’s daddy coming home?’ You know? Who needs him? Hey, he wasn’t there to teach me how to shoot my first basket, but I learned it, didn’t I? And I got pretty damn good at it too, didn’t I, Uncle Phil?

Phillip Banks: Yeah, you did.

Will: Got to do my first date without him, right? I learned how to ride, I learned how to shave, I learned how to fight without him. I had *fourteen* great birthdays without him; he never even sent me a damn card. The hell with him!

[pause]

Will: I didn’t need him then, I won’t need him now.

Phillip Banks: Will…

Will: No, you know what, Uncle Phil? I’m gonna get through college without him, I’m gonna get a great job without him, I’m gonna marry me a beautiful honey and I’m having a whole bunch of kids. I’m gonna be a better father than he ever was. And I sure as hell don’t need him for that, ’cause there ain’t a damn thing he can teach me about how to love my kids!

[long pause; he’s crying]

Will: How come he don’t want me, man?

Scene from Fresh Prince of Belair.

I remember watching the scene from Fresh Prince of Belair for the first time and felt so connected to what he was saying. I too had absent parents who treated me out of convenience instead of want. Lonely is the best way I can describe my feelings towards the missing people that were supposed to step up and do the right thing. Some people say absence makes the heart grow fonder, but when your parent is negligent it causes a certain degree of pain.

Every time my parents would choose to jump in and out of my life a rift grew. I questioned why they chose that time to step up when they wanted no part in anything else going on. One of my battles as a child was dealing with questions of why I was not good enough for them. I was smart, imaginative, and loved to learn. The older I got I started to feel guilty for being a burden to them. I always felt that I was the reason my mom was slightly crazy and my dad didn’t want me because I made my mother nuts. It didn’t matter how much I achieved I was never good enough for them.

Overtime as their absent parenting grew I felt raw anger towards them. Other children would state how great their parents were. How they loved them unconditionally. The one time that I rejected seeing my father I was guilt tripped by family members. They stated that if I didn’t love my dad I should say it directly. I was torn into pieces that day instead of being told my emotions are validated. Thirteen year old me made a promise that day that if I ever have children; I would love them until the day I take my last breath, and be better than what they were one hundred percent.

Two boys later I have kept my promise. I, no longer keep contact with my mother by ensuring she has no access to abuse my children. My promise is simple yet it allows my children to be loved. Unlike my mother I will allow my children to make mistakes and not treat them as a disappointment. I will make sure they have food in their bellies before myself. They will always have a safe space to live in and someone to care about their needs. My last promise is to tell them I love them with each passing day. To hold them when they are scared and cheer them on when they do great things.

I am not a perfect parent by any means. My parents made a choice to walk away from me, what I learned is that I will be better. I did learn something from them and that is my children are first before me. My love for them shows them they are enough. They will not go through life wondering how they failed me. Love and trust does not come easy for me, but my children will never have to struggle with feeling alone and unheard. I may have been unwanted but I will always want my boys.

Written by: Ali Johnson

30 weeks with my son Maximus.

myself, Travis, and Max

Advice To Me

I recently bought a journal called 300 writing prompts. When I purchased it I thought it would be a good way to ask hard questions I’ve avoided, each question in this self writing journal brings me closer in my journey of self healing. I want to heal drug and alcohol free. One way to do this is by writing and telling my story for others to hear. I put this journal away for half a year when I started to feel emotional answering questions regarding advice to myself. A few days ago my partner found the journal in the deep depths of our disorganized garage. I pondered the idea if I should start writing in it again.

I opened this tiny blue journal I felt a wave of relief to see it blank in spots that asked hard hitting questions. I have decided to write here on the Garden of Love questions that are asked. The question I landed on today was ” If you go back in time exactly 10 years and give yourself some advice, what would you tell yourself?”

Ten years ago I was an emancipated minor dealing with my abusive mother trying to figure out my life. I was drinking to deal with my pain and forget that I existed. Without a care in the world I was on self-destruct mode. Ten years ago I was an awful human being who fell for victimization of myself. I was a user. Anger does wild things to a person, it makes them toxic and highly volatile.

The person I was ten years ago probably would have said I don’t need your advice. She was stubborn and felt that she could figure out the world on her own. Looking back at the person I was, I feel that the only advice she would receive is keep going. Everything she would do in the next three years of her life would give her a purpose. I know she will have to fight hard and feel like a failure but if she keeps going her life gets better.

Ten years ago I was at my all time low. Looking back at who I was and who I would become is endearing. I have come really far in life and just now hitting a point of knowing what my purpose is. I have three amazing boys and have moments of pure happiness. Ten years ago I thought this is the end of things. I truly believed that if I would not live for another ten years. My feelings and emotions got the best of me on all accounts. I’m glad ten years ago I made it through the darkest time period.

I hope through in the next ten years from now I can give this sound advice; keep living truthfully, live like tomorrow is your last day. I also hope to see future me love herself even when she cannot find the reason to. Lastly I hope ten years from now I can look back and see the good I have done and know that I lived with purpose and good intentions. I owe it to the ones I love and myself to grow up learning and becoming the person I set out to be.

Written by Ali Johnson

2009
2018

Mothers Day For Women With Abusive Mothers

Mothers days is a sore spot for those who have abusive mothers. The aggressive reminder of pain inflicted given from those whom thrive on it. It’s a great day for some; but with others who have dealt the blow of being unloved or smothered by woman unable to show true compassion beyond their narcissistic parenting, its considered a day of emotional turmoil. Every feeling, every question of why, every memory blurts through the heart like emotional vomit. The painful part of dealing with abusive mothers on mothers day is the silence one keeps inside their minds.

To the ladies balled up on your bathroom floor on Mothers Day: it’s going to be alright. Right now what you’re feeling it’s allowed to be angry and feel robbed. It’s alright to read on social media about all the great moms and feel that familiar twinge of heartbreak. Those tears you are crying right now will soon pass and you will get off that floor.

The ladies with children of their own on Mothers Day had the challenge to brave it out for their children. All day they put on the brave face as their children proudly show them the crafts they made. Once the night has come and the feelings become too much they simply allow the panic to set in. It brings the self-doubt that they too are failing just has someone failed them. To those moms who kept it together until the end, know this the cycle of abuse stops with you. Just because the woman who caused unspeakable pain does not define you as a mother. Cry it out, scream like no tomorrow, break a plate, at the end when you have nothing left for that woman to steal you get off that floor and be the warrior. You survived Mothers Day for one more year. That takes guts and strength that most do not know. If you survived this Mothers Day and keep on going I promise you they already lost.

Although they tried to steal your soul and break you into a million pieces abusive mothers lose out on love themselves. I know this day sucks a billion times over. It feels suffocating as if your head is being held under water and you are drowning in emotional turmoil. I know you might lash out on those you care about and feel guilty but you are not her. Mothers day is a very dark day for you and I; please I beg you take a moment to see the goddess in yourself, and find love that was stolen in your soul. At the end of the dark day that is Mothers Day I want you to look in the mirror and tell yourself you made it. You survived and that is what counts.

With Love to those ladies who survived the pain of the Mothers day,

Ali Johnson.

Be Confident

I almost made a massive mistake regarding my eldest son. Today I was seconds away from ruining his confidence based on his choices. My partner was the one to step in and make me realize there are things that I do as a mother that goes against teaching my son to be a confident human who can love himself.

I try to tell my children to love who they are despite what other people say. This is a core image I want them to hold for their entire lives. I try to teach my children to love their bodies and minds and encourage understanding that their bodies are temples. If they love their temples and treat it well good things will happen to them. I want them to love themselves wholesomely, so they can grow with the world and enter as brightly as they came into it.

My eldest son struggles some days with loving who he is because other people bully him for his personality and his disabilities. This year has been one big disaster of other boys trying to tear him down for whom he is. This year he not only had boys his age bully him but adults as well. School had become a mental prison to him. I have watched him come home in such a state that I tore into his teachers and started fighting back against his fellow peers. No child should through life being told he is a disappointment nor should have the words kill yourself said. No human should have this abuse placed on them.

His disabilities do no define my son if anything I applaud his strength in living with them. He refuses to let his disabilities hold him back. He is this amazing little man with a bold sense of the world. Despite struggling with autism and juvenile osteopathic arthritis, he courageously faces each day with a can do attitude. His issues do not lie with himself but from others. Others see his disabilities as inconveniencing and annoying. Instead of treating him with open mindedness and encouragement they meet him with discouraging opinions. My eyes have been opened this year to how vile and disgusting people can be to others and chose to target those different. My son is being activity bullied due to his differences by his teacher and peers alike. It is my job as his mother to fight for him and show him love for himself to combat those discouraging lack of values in others.

I lost sight of that image today, and I am so grateful my partner reminded me of why we teach him to be confident. As he picked out an outfit that had pink stripes, green shorts, and a fedora with gold flecks, he came to me beaming with pride of his new-found outfit. I looked at it and almost told him to put it back because I didn’t want others bullying him based on looks. My partner stopped me mid sentence and said doesn’t this make him look great. I stopped and re looked at my child, he had the biggest grin on his face. Pride filled his eyes, he was unique. Instead of making him put the outfit back and chose one to fit the norms of society I let him keep it. It doesn’t matter if anyone else dislikes it; as long as he is happy in his body, no one else can take away the pride that he feels.

I often forget the message that I try to convey to my sons. Love yourself and be prideful in your choices. It is not our place in the world to dash the hopes and dreams of tiny humans, instead it is our place to lead by example and show them the pathway to true self happiness.

My son on Canada Day 2018.

Written by Ali Johnson

*Disclaimer: I do not give permission for written work to be copied without permission of the author. Any work is to posted outside of website give credit to the writer of this article.

Trying To Be Super Mom

I parented hard in the last two days, so much, that when my husband called me supermom tonight it felt good to hear. I just got my tiniest human down at ten twenty-seven pm. For the last day and a half we had to manage through RSV and bronchitis.

We were between hospital and home starting at night again in the morning to return due to my eighteen months old laboured breathing. His fever soared to high temps of 39.4 degrees Celsius with no sign of relief. We have been here once before when Max was six months of age. Last time we had this he stayed one week on the pediatrics ward of the Guelph Hospital. Recognizing the signs this time around I’m glad we took a pro active approach.

Going through this again was draining on my emotions and my ability to feel like I was doing my job as his mother. When we had to do his x-ray and nebulizer I felt like the worse mother who existed. The x-ray for infants and toddlers seems like torture devices. As I put on my lead vest, placing my baby into the tube holding his arms above his head, he screamed so loud. I felt so useless, the only words I could say to him was I’m sorry. Tears streamed down both our eyes. I would never cause my children pain and seeing him in distress tore my heart out. I know that these treatments are to help him but non the less I wish I could have stolen his pain away and made his world harm free.

Not my child but a picture to show the x-ray tube. Instead of a calm baby shown here Max was screaming. His looked terrified. I think this was the second moment in the hospital I felt like a failure.

The moment that hit me the hardest was trying to place a nebulizing mask on my sons face. As advised from the nurses I had to hold my son down and keep the mask on his face. The first nurse left Max and I to our own devices. Maximus with his strength of fifty babies on steroids; fought hard like Muhammad Ali in the ring, left me feeling defeated. I was thankful another nurse took sympathy and held the mask while I tried to wrangle Maximus to stay still. Essentially I channelled my inner Steve Irwin and crocodile wrested my stressed toddler. In these moments I felt so primal that afterwards I wanted to break.

This emotional ride of Maximus being sick has left me feeling defeated. I waited for the cab for thirty minutes with him sleeping in my arms. From the wheezy breath sounds and small whimpers escaping from his lips I had a moment of panic. How can I be a good mother when all I wanted to do was get home and cry. I felt utterly selfish at this moment, I wanted to be a good mother but instead I thought of myself.

Since we got home he was given a plethora of medication, adding to the layers of distress. After napping with Max to monitor his breathing I put on Thomas the Train and took a shower. I got my moment of clarity that even feeling defeated is part of the mother package. Being alone today and handling a sick child was my wake up call that even with life throwing some serious wrenches I can do this. When my husband called me supermom; I choked back my tears of self-doubt, and plan to hold on a little longer.

This is a stepping stone in learning motherhood. I can either sink or swim or roll with the punches. I sit here typing feeling relieved to know my baby will be OK, all of this will be OK. My muscles may be sore from rocking my child, my body tired from the last day and half, but I feel clear in how much I love my children and what it takes to make sure they have a mother that cares. I will give one supermom moment at a time until my last breath.

Written by: Ali Johnson

My husband The Caveman, Mr Max, and myself.